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Newly diagnosed obstructive HCM: seeking advice and reassurance
Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 11 12:22pm | Replies (46)Comment receiving replies
@cpaddyo We "met" in a different discussion earlier and I am glad you are at Mayo and yes, it is the Gold Standard treatment. I was 75 when I had a septal myectomy, so very glad I did, the surgery is 99+% successful at Mayo. I traveled from Upstate NY to there on referral from my doctor. Like you, my HCM worsened and surgery was necessary.
There are good discussions about septal myectomies, here are 2: https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/ and https://connect.mayoclinic.org/discussion/my-septal-myectomy-decision-and-10-things-ive-learned-since/
Verapamil in high doses created an uncomfortable problem for me that Metamucil, exercise, much water and fiber did not help, hope that is not your experience! Keep us posted on this journey. When is you next appointment?
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@walkinggirl Thank you for your valuable insight regarding oHCM.
I was diagnosed with obstructive HCM in May after 2 recent cardiac episodes and many years of sporadic symptoms . After the first episode (in February) the hospital cardiologists told me I had Takotsubo syndrome because they observed a severe ballooning of the left ventricle during the echo. I explained that I did not have a recent severe physical or emotional stress situation, the cause of Takotsubo syndrome, but they maintained their diagnosis and sent me home after 3 days. The 2nd time was in early May with much more severe symptoms. 3 days in cardiac ICU + 2 days in observation. The cardiologist, realizing that it was not Takotsubo, suggested the genetic test and cardiac MRI. The test came back positive for HCM.
I am now under the care of the director of the HCM center in NYC. The stress test performed at the center did not reveal any obstruction although I performed at 130 % of the average. I then had a cardiac catheterization with a chemical IV which demonstrated severe obstruction and ballooning of the left ventricle, apparently a very rare occurrence in HCM patients, hence the cardiologists’ confusion.
First I was prescribed Metoprolol which strongly exacerbated my hair loss. Then the HCM specialist switched to Bisoprolol (a very low dose because I do not have constant obstruction ) but I still had palpitations and shortness of breath. I was then prescribed Disopyramide in addition to Bisoprolol, and also Pyridostigmine to counteract the nefarious side effects of Disopyramide. Well, that was not well tolerated at all by my digestive system so I was taken off those 2 medications. The HCM specialist is now trying to get me approved for a new medication called Aficamten, FDA approved only in January 2026. But he is leaning towards septal myectomy and mitrial valve repair as being the best solution. I admit that I am terrified at the idea of the open heart surgery. Is the recovery excruciatingly painful and lengthy?
I apologize for the long post. I thought providing background would be helpful.